Compression vest/garment

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lynn1946
lynn1946 Member Posts: 14
edited January 2018 in Lymphedema

Hi everyone, I'm a newbie to this forum. I had bilateral mastectomy years ago (too many to count lol) and never had a problem until about 3 years ago I got a bug bite under my right arm pit.. I got a really bad infection in the right side of my chest and since then I've noticed swelling and finally about a month ago realized it's lymphedema. I had a ton of nodes removed from both sides, they used to do that way back then..

I'm seeing a therapist for MLD and do massage and exercises myself with very good results.. swelling has gone down amazingly. The lymphedema is in my upper back both sides, chest and both upper arms.. everything else is fine. So here's my question (at last).. I've been wearing different kinds of compression garments and since the swelling was underneath my arms and tops of my arms and back I bought a great vest with 3/4 sleeves.. it's very comfy, tight but comfy. My therapist suggests I get some arm sleeves to prevent swelling of the normal lower arms and now I'm concerned that the 3/4 sleeve may have been a bad move as maybe, and I don't know this, fluid could push down the arm to the hand?? I don't know.. I plan on flying later in the year and thought I would wear a sleeve which would partially go over the 3/4 sleeve top but cover the bare arm and hand. Boy am I rambling on.. sorry.. I am very proactive and and thrilled with the improvements so far and want to stay on track. Any suggestions or comments greatly appreciated.. I thought I was done with cancer side effects but I guess not..

Have a great day everyone.

Lynn

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  • Mucki1991
    Mucki1991 Member Posts: 294
    edited December 2017

    I can't speak to the sleeves as I haven't gotten mine yet as I'm still in treatment but I do wear the Tommy Copper long sleeve compression and since I have mild LE it works pretty well for me.

    Best Wishes

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited December 2017

    how did you know it was lymphedema? I have a similar situation happen although no bites or injury on that side. I had Mastectomy on left side and had silicone implanted 3 years ago. Just a few weeks ago I noticed that the implant feels a little different and that there is what appears to be a little more fat on the back area of that side. When I press on it it leaves no pitting or indentations but feels funny when my arm is down. I can feel it. No swelling in the arm or hand ay all. Could this possibly be a result of weight gain. I gained about 10 pounds over the past year. Letrozole!! I have appt with plastic surgeon next week and due for my checkup with lymphedema specialist Jan 9. I never had it but always went to her just to be proactive and have her check. .

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  • lynn1946
    lynn1946 Member Posts: 14
    edited December 2017

    Hi thinking pos. Now I'm no expert and have only recently realized myself that the swelling I have is lymphedema. The symptoms you describe sound very much like my own.. I had some irritation and fullness feeling and I thought I was just getting fatter.. one morning I looked in the mirror and both sides of my chest and on my sides under the arms were swollen a lot.. I felt it and it felt more like fluid than fat.. (you can't get that fat overnight) after checking into it all it turns out it is lymphedema.. it's in my back, front and both sides. I would say at this point it's mild. I've been moving the lymph with manual lymph drainage and doing exercises for it from the net.. deep breathing as well. I'm seeing a therapist and have sleeves on order but in the meantime wearing a long sleeve compression vest by Marena co. You lymphedema specialist will know exactly what's going on.. in the meantime keep everything moving and check out some exercises that open up the lymph pathways.. even if you don't have it you are at risk for it..I would not fly anywhere until you see your doc. By the way.. the manual lymph drainage and the exercises all really really help.. my swelling is down about at least 85% and I'm still working on it. I'm also on a low if no salt diet. Interstingly.. after seeing the therapist and having treatment.. working out a bit my self.. low salt diet etc etc.. I got on the scales and was 4.5lbs lighter than the day before..obviously fluid but amazing. Let us know how you fare after the 9th.

    Lynn

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited January 2018

    Thinkingpositive. Did you get looked at yesterday as you said you would? Hope you got some insight on your swelling and care also.

    Mucki1991. Hi, make sure your tommy copper sleeves have gradient compression in them. This helps fluid move out not just contain it. Great your keeping your le mild!

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited January 2018

    hugz4u....yes I did go to my plastic surgeon last Thursday. He looked and was pretty sure it was back fat as I have gained some weight. I have an appt with the lymphedema specialist on the 26th of January. Just to be sure. I go to her every nine months even though I have never had lymphedema. This way she measures my arms all the time so I can treat sooner than later if I ever get it.

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  • Outfield
    Outfield Member Posts: 1,109
    edited January 2018

    Lynn,

    Short answer is yes, you do have to keep in mind that compression can trap fluid out further away from the center of the body if there is a non-compressed body part out further than the compressed part. Like a hand or a foot. One of the really vexing things about lymphedema is that nobody can tell you for sure what's going to happen with you in particular. I could tell you my experience (I wear a sleeve, no glove or gauntlet, and occasionally do get swelling in my hand that is fairly easy to treat) but that doesn't have much to do with predicting how things will go for you. Now here's my advice: decide how much you want to "treat" things that haven't happened yet, and then just make sure you are prepared for anything that does happen. Using myself as an example again: despite rarely having hand swelling and wearing only an arm sleeve, I have a glove and I know how to wrap, including my hand. I also have the wrapping supplies. I've really gotten into the sort of habit (nearly tic) of checking my sleeve for wrinkles.

    I hope that helps. It's hard that a lot of it is kind of trial and error and getting to know your lymphedema as if you were getting to know a somewhat difficult - but definitely permanent - new member of your household, but that's what you have to do.


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  • lynn1946
    lynn1946 Member Posts: 14
    edited January 2018

    Hi Outfield.. thanks for answers.. yes I totally agree.. have been leaning sooooo much from this forum and my own experience so far. I ordered the Tommie Cooper wrist sleeves as I have a Marena soft compression garment which I love with three quarter sleeves.. I'm constantly checking my lower arms for swelling and sometimes they do puff up more than others.. The Tommie Coopers were a complete waste of time.. sent them back.. too tight too small and all wrong compression. Now I've moved on to a lovely Sigvaris low compression sleeve which I love and is very comfortable.. have ordered a second one for my other arm as now I know this works for me.. both arms are affected at the tops. I've also ordered another (costing me a fortune) Marena ... I love these tops.. horribly expensive but really works for me.. my lymphedema is in my back, chest waist and tops of both arms so I need a lot of covering. My crafty plan is..... to cut the sleeves off the 3/4 sleeve to just above the elbow or maybe a little higher (very carefully!!) so I can wear the top with my sleeves as I'm flying out to Seattle in Feb. I'm doing the Lebed Method lymph opening each day and really like it.. in my opinion it really does work. I'm so fortunate to have mild le and plan on keeping it that way... no or low salt diet, careful exercise and lots of outdoor walking... so far so good.. it's all working. Hope this info can be of use to someone else with mild trunkel le.

    This forum really is a wonderful place to learn. I think one of the secrets is to be kind to your body and know what works for you. I did try another sleeve that I was measured for at a mastectomy supply store and I hated it.. was soooo tight and crushed my upper arm.. the one I have now the Sigvaris, is really comfy and I think will do the trick for now anyway.. hopefully won't need anything stronger. One of the things I'm amazed at is how le responds to what you do each day.. lymph opening and draining really seems to work.. doing nothing does not.

    Good luck all, hang in there.

    Best wishes - Lynn


    p,s, I tried to post links to the sleeve and garment but am not allowed at this time.

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